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Symptom
Management:
When Do I Call My
Oncologist?
HEATHER AUGUSTYNIAK, APN
NORTHWESTERN MEDICINE
The cancer journey can be a long, arduous one, and as a
result, cancer survivors usually cannot just pick up their
lives and resume where they left off before the cancer began.
Often, there are physical, emotional, cognitive, relationship,
and financial issues that will create what experts call, a “new
normal,” and cancer patients will need to learn to adjust
before they can get on with their lives.
NCCN.com Tip of the Month, August 2013
Survivorship Care: Ovarian Cancer
Survivorship Care: Ovarian Cancer
• High recurrence rate
• Provides a platform to openly discuss actual risks, address fear of
recurrence, and review s/s of recurrence to call with
• Introduce concept of chronic disease if cancer were to return
• Discuss clinical trial opportunities and maintenance therapies vs
observation
• Review role of CA 125 in surveillance setting
• Regaining and Improving Health and Strength
• Identify physical therapy needs
• Promote healthy habits
• Physical activity
• Smoking cessation
• Alcohol limitations
• Diet
• Maintenance of a healthy BMI
• Screening mammograms and colonoscopies
• Bone Health
It is important to remember that while you cannot control whether your cancer recurs,
you can control how much you let the fear of recurrence impact your life.
-cancer.net
How do you know which symptom is significant?
Is this unusual to you?
Is there a clear explanation for your symptom?
Is it persistent?
Has it lasted greater than 2 weeks?
Symptoms to Report to Your Gynecologic Oncologist
Pulmonology
• Abnormal shortness of breath
• A non productive cough that lasts longer than 1-2 weeks
Gastrointestinal
• Pain, pressure or cramping that lasts longer than 1-2 weeks (abdominal, pelvic, rectal, hip and or back)
• Abdominal bloating or distention
• Nausea and/or vomiting that does not resolve
• Unintentional weight loss greater than 5 pounds
• Unexplained weight gain greater than 5-10 pounds
• Blood in stool
• Difficult bowel movements or constipation that lasts longer than 1-2 weeks despite treatment
Urological
• Difficult or painful urination not associated with a urinary tract infection
• Abnormal leaking of urine
• Blood in urine
Gynecological
• Vaginal bleeding or abnormal vaginal discharge
• Painful intercourse
Common Late term treatment related side effects
•Fatigue
•Chronic Pain
•Neuropathy
•Cognitive Problems
•Sexual Dysfunction
•Insomnia
•Urinary incontinence
•Skin, hair, and nail changes
•Osteoporosis
•Lymphedema
•Depression, Anxiety, and Fear of Recurrence
•Second cancers
In general, gynecologic oncology long term treatment effects can be characterized as issues
involving one of two domains of quality of life (QOL): physical and emotional (psychological)
Common Physical Long Term Effects in Gynecologic
Cancer Survivors
Neurotoxicity — Persistent neurotoxicity is an important quality of life issue for long-term survivors
and is most commonly due to the adverse effects of chemotherapy. Presentation of neurotoxicities
can be as follows:
• Muscle cramps
• Ringing in ears or trouble hearing
• Discomfort in feet
• Upper extremity discomfort
• Trouble walking
• Numbness and weakness in the hands or feet
Cognitive dysfunction — also known as chemobrain
Fatigue — Fatigue occurs in almost all patients treated for a gynecologic cancer and may persist after
completion of treatment.
Gastrointestinal toxicity — Women treated may have long-term issues with their gastrointestinal (GI)
system as a result of the previous disease, surgical treatment, and medical therapy. The presence of
GI symptoms correlates with lower QOL, worse emotional status, and greater fear of recurrence.
Common Physical Long Term Effects in Gynecologic
Cancer Survivors
Gynecologic effects
Loss of fertility — Most women treated for a gynecologic cancer experience surgically or
medically-induced infertility.
Sexual dysfunction — Sexual problems are reported by survivors and may be
secondary to menopausal symptoms, dyspareunia, or to a primary loss of desire. Issues
with sexual dysfunction are present even among women who continue to be sexually
active.
Menopause — For women who complain of bothersome menopausal symptoms as a
result of treatment, limited hormonal therapy may be an option. For women who can not
or would prefer not to take hormonal therapy, selective serotonin reuptake inhibitor (SSRI)
medications have been shown to be effective in treating menopausal symptoms.
Ancillary Services
• Sexual medicine
• Pelvic floor rehabilitation
• Onco-fertility
Common Psychological Effects in Gynecologic
Cancer Survivors
Depression — Depression can be a persistent issue for survivors
Anxiety — Although the data are limited, anxiety may be more problematic than depression for survivors. Anxiety may
be manifest in two specific ways in survivors:
• Fear of recurrence – More than half of survivors report a fear of disease recurrence, which may persist over time.
• Preoccupation with CA 125 values – Most survivors report anxiety regarding CA 125 testing, even in cases where
they have been disease free for several years
Guilt — Survivors may have guilt related to a number of issues:
• Guilt due to delay in diagnosis – Often times symptoms that herald a diagnosis of cancer are non-specific. Despite
this, some patients suffer from guilt when they are diagnosed (especially advanced stage disease) because the lack
of recognition of “early” symptoms may have resulted in a delay in diagnosis.
• Familial guilt – Survivors with a known BRCA mutation sometimes express feelings of guilt due to transmission of the
genetic mutation to their children or if they developed after opting against prophylactic surgery
• Survivors’ guilt – Survivors’ guilt can occur in some long term survivors who have witnessed others with similar
disease stage experience recurrence and then succumb to the disease.
Poor body image — Poor body image has been significantly associated with fatigue and sexual functioning, particularly
among women who were premenopausal at diagnosis. Some have even reported this as “feeling like a stranger in my
own body”.
Poor body image is primarily due to long-term effects of prior surgical treatment, including:
• Surgical scars
• Loss of the uterus and/or ovaries
• Presence of an ostomy (which in some women is permanent)
• Wound complications
Your healthcare team: Is it a well oiled machine?
The patient is the most important
member of a healthcare team at all
times; especially in survivorship.
It is important to have an existing and
ongoing relationship with not only the
oncologist but the primary care provider.
It is also important to ensure that both
providers that accurate and up to date
information.
◦ More and more attention is being
focused on the survivorship phase of
cancer and the need for a seamless
transition back to the primary care
provider. However not many facilities
have a process in place yet. Therefore
the patient needs to be an active
participant in the healthcare team.
Survivor:
Most valued
member of the
healthcare team
Primary
Care
Physician
Oncology
Team
Questions?
Thank you!
Heather Augustyniak, RN, MSN, FNP-C
Survivorship and Gynecologic Oncology APP
Northwestern Medicine Regional Medical Group

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SHARE Ovarian Cancer RoundTable: Coping with Side Effects

  • 1. Symptom Management: When Do I Call My Oncologist? HEATHER AUGUSTYNIAK, APN NORTHWESTERN MEDICINE
  • 2. The cancer journey can be a long, arduous one, and as a result, cancer survivors usually cannot just pick up their lives and resume where they left off before the cancer began. Often, there are physical, emotional, cognitive, relationship, and financial issues that will create what experts call, a “new normal,” and cancer patients will need to learn to adjust before they can get on with their lives. NCCN.com Tip of the Month, August 2013
  • 4. Survivorship Care: Ovarian Cancer • High recurrence rate • Provides a platform to openly discuss actual risks, address fear of recurrence, and review s/s of recurrence to call with • Introduce concept of chronic disease if cancer were to return • Discuss clinical trial opportunities and maintenance therapies vs observation • Review role of CA 125 in surveillance setting • Regaining and Improving Health and Strength • Identify physical therapy needs • Promote healthy habits • Physical activity • Smoking cessation • Alcohol limitations • Diet • Maintenance of a healthy BMI • Screening mammograms and colonoscopies • Bone Health
  • 5. It is important to remember that while you cannot control whether your cancer recurs, you can control how much you let the fear of recurrence impact your life. -cancer.net
  • 6. How do you know which symptom is significant? Is this unusual to you? Is there a clear explanation for your symptom? Is it persistent? Has it lasted greater than 2 weeks?
  • 7. Symptoms to Report to Your Gynecologic Oncologist Pulmonology • Abnormal shortness of breath • A non productive cough that lasts longer than 1-2 weeks Gastrointestinal • Pain, pressure or cramping that lasts longer than 1-2 weeks (abdominal, pelvic, rectal, hip and or back) • Abdominal bloating or distention • Nausea and/or vomiting that does not resolve • Unintentional weight loss greater than 5 pounds • Unexplained weight gain greater than 5-10 pounds • Blood in stool • Difficult bowel movements or constipation that lasts longer than 1-2 weeks despite treatment Urological • Difficult or painful urination not associated with a urinary tract infection • Abnormal leaking of urine • Blood in urine Gynecological • Vaginal bleeding or abnormal vaginal discharge • Painful intercourse
  • 8. Common Late term treatment related side effects •Fatigue •Chronic Pain •Neuropathy •Cognitive Problems •Sexual Dysfunction •Insomnia •Urinary incontinence •Skin, hair, and nail changes •Osteoporosis •Lymphedema •Depression, Anxiety, and Fear of Recurrence •Second cancers
  • 9. In general, gynecologic oncology long term treatment effects can be characterized as issues involving one of two domains of quality of life (QOL): physical and emotional (psychological) Common Physical Long Term Effects in Gynecologic Cancer Survivors Neurotoxicity — Persistent neurotoxicity is an important quality of life issue for long-term survivors and is most commonly due to the adverse effects of chemotherapy. Presentation of neurotoxicities can be as follows: • Muscle cramps • Ringing in ears or trouble hearing • Discomfort in feet • Upper extremity discomfort • Trouble walking • Numbness and weakness in the hands or feet Cognitive dysfunction — also known as chemobrain Fatigue — Fatigue occurs in almost all patients treated for a gynecologic cancer and may persist after completion of treatment. Gastrointestinal toxicity — Women treated may have long-term issues with their gastrointestinal (GI) system as a result of the previous disease, surgical treatment, and medical therapy. The presence of GI symptoms correlates with lower QOL, worse emotional status, and greater fear of recurrence.
  • 10. Common Physical Long Term Effects in Gynecologic Cancer Survivors Gynecologic effects Loss of fertility — Most women treated for a gynecologic cancer experience surgically or medically-induced infertility. Sexual dysfunction — Sexual problems are reported by survivors and may be secondary to menopausal symptoms, dyspareunia, or to a primary loss of desire. Issues with sexual dysfunction are present even among women who continue to be sexually active. Menopause — For women who complain of bothersome menopausal symptoms as a result of treatment, limited hormonal therapy may be an option. For women who can not or would prefer not to take hormonal therapy, selective serotonin reuptake inhibitor (SSRI) medications have been shown to be effective in treating menopausal symptoms. Ancillary Services • Sexual medicine • Pelvic floor rehabilitation • Onco-fertility
  • 11. Common Psychological Effects in Gynecologic Cancer Survivors Depression — Depression can be a persistent issue for survivors Anxiety — Although the data are limited, anxiety may be more problematic than depression for survivors. Anxiety may be manifest in two specific ways in survivors: • Fear of recurrence – More than half of survivors report a fear of disease recurrence, which may persist over time. • Preoccupation with CA 125 values – Most survivors report anxiety regarding CA 125 testing, even in cases where they have been disease free for several years Guilt — Survivors may have guilt related to a number of issues: • Guilt due to delay in diagnosis – Often times symptoms that herald a diagnosis of cancer are non-specific. Despite this, some patients suffer from guilt when they are diagnosed (especially advanced stage disease) because the lack of recognition of “early” symptoms may have resulted in a delay in diagnosis. • Familial guilt – Survivors with a known BRCA mutation sometimes express feelings of guilt due to transmission of the genetic mutation to their children or if they developed after opting against prophylactic surgery • Survivors’ guilt – Survivors’ guilt can occur in some long term survivors who have witnessed others with similar disease stage experience recurrence and then succumb to the disease. Poor body image — Poor body image has been significantly associated with fatigue and sexual functioning, particularly among women who were premenopausal at diagnosis. Some have even reported this as “feeling like a stranger in my own body”. Poor body image is primarily due to long-term effects of prior surgical treatment, including: • Surgical scars • Loss of the uterus and/or ovaries • Presence of an ostomy (which in some women is permanent) • Wound complications
  • 12. Your healthcare team: Is it a well oiled machine? The patient is the most important member of a healthcare team at all times; especially in survivorship. It is important to have an existing and ongoing relationship with not only the oncologist but the primary care provider. It is also important to ensure that both providers that accurate and up to date information. ◦ More and more attention is being focused on the survivorship phase of cancer and the need for a seamless transition back to the primary care provider. However not many facilities have a process in place yet. Therefore the patient needs to be an active participant in the healthcare team. Survivor: Most valued member of the healthcare team Primary Care Physician Oncology Team
  • 14. Thank you! Heather Augustyniak, RN, MSN, FNP-C Survivorship and Gynecologic Oncology APP Northwestern Medicine Regional Medical Group

Editor's Notes

  1. As nurses, we have an important role in education patients about concerns. Many survivors do not receive SCPs. During this presentation, we’ve identified various reasons for this and hopefully ways to help break down those barriers. Barriers to providing SCPs (resources, time, commitment of the organization). Education about the need and utilization of SCPs is important. Empowering patients to be involved in their care is key. As oncology nurses, we have great opportunity to advocate for patients and enhance quality of care through effective survivorship care planning.